tag:blogger.com,1999:blog-3685455393791710375.post3440990478615492591..comments2023-03-25T19:22:20.292+09:00Comments on All the Marletts, Our Life as a Family: Matters of the heart…All the Marlettshttp://www.blogger.com/profile/04779861921449882694noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-3685455393791710375.post-42332124861861956882011-11-23T02:31:06.437+09:002011-11-23T02:31:06.437+09:00I'd been wondering how all of you were doing. ...I'd been wondering how all of you were doing. I'm sorry to hear of more progression for Lucy. <br /><br />Eithene's cardiac issues were almost identical to what you described. We had the same experience, that it is very hard to find the balance of what is worth treating and what will just do more harm. We had Eithene on clonidine for most of her life (first by patch, then by IV the last 8 months). For about a year we added a beta-blocker to that, to reduce her tachycardia, and help with her arrythmias. It worked, but as her autonomic dysfunction progressed we saw too many episodes of sudden low blood pressure in addition to the high pressures, and had to stop the beta blocker. For the last year of her life she struggled intensely with soaring and plunging blood pressures and heart rates that made all of our medication choices very difficult. She ended up needing daily IV clonidine to lower pressures and heart rates, and daily IV hydrocortizone to keep her pressures from getting too low. She had life-threatening arrythmias due to autonomic issues, one of her pain meds, and her severe electrolyte problems (that were related to her severe fluid balance problems, which I know Lucy also has some issues with). All of the IV diuretics that she needed to keep those in check just made the heart problems worse! <br /><br />In the end, there just wasn't a "right" choice of how or what to treat.... we just did what you are already doing: We tried to make her as comfortable as possible for the time she had. It is very hard, but we can affirm what you already know, there just aren't clear treatment choices for kids as complicated as ours. <br /><br />One simple "low-risk" treatment that worked for Eithene to lower her heart rates and relieve some of the stress on her body, was full-time O2. We just left 1-2 L on her no matter what her O2 sats were (often they were 98% or above), and this really did help. It's another tube, but was relatively easy to manage. Just something to think about. <br /><br />Happy Thanksgiving. :)Jessicahttps://www.blogger.com/profile/09876285592078060303noreply@blogger.comtag:blogger.com,1999:blog-3685455393791710375.post-24208284926067538472011-11-21T14:21:13.701+09:002011-11-21T14:21:13.701+09:00Our daughter, Kristen (now 21), also has mitochond...Our daughter, Kristen (now 21), also has mitochondrial disease with significant cardiac arrhythmias and dysautonomia. She has required cardiac pacing and medication since she was 3 (and multiple cardiac arrhythmia ablations in 2008). If you ever want to speak with a mom who understands please feel free to contact me by email, on FB or by phone. Joanne K servedogmom@yahoo.comservedogmomhttps://www.blogger.com/profile/18051891451657688679noreply@blogger.com